Welcome home! Please contact lincoln@icrontic.com if you have any difficulty logging in or using the site. New registrations must be manually approved which may take several days. Can't log in? Try clearing your browser's cookies.
Feeling Down about Diagnosis, Diet
Hi everyone. I've been sulking the past few days. Classes started Wednesday, so things are already hectic. Add to that, though, Tuesday I went to see my gynecologist about pain during sex that has not gotten better no matter what I have tried. By chance I mentioned that I have had bladder problems since childhood that no one could diagnose either. After taking my history, an exam, and a questionairre, it turns out that (with over 95% certainty) I have intersitital cysitis - a chronic bladder condition for which there is no cure and no known cause as of yet. It makes sense, looking back, since I've also had other symptoms, including abdominal pain so bad that I missed a great deal of my senior year of high school and withdrew from my first semester of college.
There are treatments. The main one is changing my diet since certain foods will trigger it. For the first 3 months I have to avoid just about everything that could be a problem, after which I can slowly try a bit of this or that. The diet has me bummed, though, since I LOVE eating. (For the curious, have a peek at the diet here: http://www.ic-network.com/handbook/diet.html#list) I'm not supposed to have any of my favorite foods - tomatos, onions, chocolate, pickles, tea, almost all fruit, etc. I can't even have most preservatives or artificial colorings. As a result, eating out is incredibly hard and even finding food in the grocery store is very difficult. I also have IBS - so my diet is already limited. I was controlling it by drinking alcohol with large meals, but that's off my list too, now. And if I have vulvodynia, as I suspect, that rules out just about everything left. And these diseases do tend to come together, unforunately.
On the one side, I am glad to have a diagnosis. I hope that at the end of this my husband and I will finally be able to have a normal sex life. He blamed himself before, and still is somehow, and that really doesn't help our relationship. Plus, if I can get my other problems under control I might actually be able to have a normal job when I get out of college. In the meantime, I do intend to see the disabilities office on campus to see if they can help me since teachers aren't always happy when a student leaves class to use the restroom.
On the other hand, though, I feel like the most enjoyable part of my day has been yanked away. I LOVE trying new foods and new restuarants. And even though my husband is a picky eater, we've always enjoyed going out to eat together. It's our best time together. I think sometimes that I wish I just had to get shots or something. And I'm a needle-phobe! But I think it would be better to have pain than to give up my greatest pleasure.
Anyways, pardon please for me being such a whiner. I am trying to deal with this and it's all so confusing and depressing right now. Even though I know I might be able to eat some of my favorite foods someday without problems (as EVERYONE keeps reminding me), there's a good possibility that I never will be - and I can't take any chances for the first three months as I try to figure out what normal is.
I know I'm not the only one here who has dietary restrictions. Maybe you can share your experiences?
Anyways, glad I am not vegetarian since unsmoked, unpreserved meat is pretty much a staple of the diet (not that it can't be done vegetarian but with my other problems, it would be very, very hard).
There are treatments. The main one is changing my diet since certain foods will trigger it. For the first 3 months I have to avoid just about everything that could be a problem, after which I can slowly try a bit of this or that. The diet has me bummed, though, since I LOVE eating. (For the curious, have a peek at the diet here: http://www.ic-network.com/handbook/diet.html#list) I'm not supposed to have any of my favorite foods - tomatos, onions, chocolate, pickles, tea, almost all fruit, etc. I can't even have most preservatives or artificial colorings. As a result, eating out is incredibly hard and even finding food in the grocery store is very difficult. I also have IBS - so my diet is already limited. I was controlling it by drinking alcohol with large meals, but that's off my list too, now. And if I have vulvodynia, as I suspect, that rules out just about everything left. And these diseases do tend to come together, unforunately.
On the one side, I am glad to have a diagnosis. I hope that at the end of this my husband and I will finally be able to have a normal sex life. He blamed himself before, and still is somehow, and that really doesn't help our relationship. Plus, if I can get my other problems under control I might actually be able to have a normal job when I get out of college. In the meantime, I do intend to see the disabilities office on campus to see if they can help me since teachers aren't always happy when a student leaves class to use the restroom.
On the other hand, though, I feel like the most enjoyable part of my day has been yanked away. I LOVE trying new foods and new restuarants. And even though my husband is a picky eater, we've always enjoyed going out to eat together. It's our best time together. I think sometimes that I wish I just had to get shots or something. And I'm a needle-phobe! But I think it would be better to have pain than to give up my greatest pleasure.
Anyways, pardon please for me being such a whiner. I am trying to deal with this and it's all so confusing and depressing right now. Even though I know I might be able to eat some of my favorite foods someday without problems (as EVERYONE keeps reminding me), there's a good possibility that I never will be - and I can't take any chances for the first three months as I try to figure out what normal is.
I know I'm not the only one here who has dietary restrictions. Maybe you can share your experiences?
Anyways, glad I am not vegetarian since unsmoked, unpreserved meat is pretty much a staple of the diet (not that it can't be done vegetarian but with my other problems, it would be very, very hard).
0
Comments
What can I say? I am so sorry to read your post and so pleased that you have found reasons for optimism from your diagnosis.
Those of us with chronic, life-altering conditions live odd lives, particularly where our diet is concerned. In my own case, with a genetically malfunctioning liver, I have ischaemic heart disease as a result of hypercholestrerol. It manifests as angina and has been controlled by drugs, diet and exercise pretty well since I had cardiac artery bypass surgery some 10 years ago.
In those ten years, both medication and surgical techniques have improved. But there are some really important things to bear in mind, I have found:
* "Nobody likes chronic". Our medics prefer a condition they can 'cure'.
* There will come a point in treatment where we reach a plateau and medical science cannot do any more. We are unlikely, at this point, to be fully well and I felt pretty abandoned for a while.
* We will get very bored with our own condition!
Good luck and may these first months lead to stabilisation and improvement.
Good luck. When do you have to start hell diet?
Thanks. I hate to say it, but it does feel good to have a little sympathy right now.
I started the diet as soon as I got out of the doctor's office Tuesday. I didn't want to remind myself of what I was going to miss. Of course, for lunch that day I screwed up a bit. I could have left the Feta on my chicken wrap but should have had the balsamic vinegar left off. It's definitely taking a while to figure out just what's on the list or not.
Thanks, and I totally understand those sentiments. I think the reason this wasn't diagnosed earlier was because my previous doctors wan't it to be something they could cure. In fact, my gyn said just about the same thing about other doctors And some docs still don't even believe in conditions like IC, IBS, etc. because there aren't always visible signs where they look most often. And even though I had been diagnosed with IBS, the only thing I've heard from doctors is "eat more fiber". Now that I've been connecting with other IBS suffers on the IC websites, I've learned that eating more fiber is sometimes the worst thing you can do. Oh well. I hope to see a doc just about IBS soon since I here there are some meds that help.
As for your second point, I can empathize. For the longest time I thought I had reached that point. Now, I wonder when I'll be back to that point.
And finally, yes, I understand how one can get bored with a condition. Heck, I'm already bored with just my diet!
I'm sorry to hear that you have health problems, too, but I am still glad to know I'm not alone.
Dharmakitten, I always feel such a pang of sympathy when I discover people have to make such radical life-altering changes to their diets... Food is the staple of Life itself - not only as a means of survival, but it's central to social and cultural interaction. It is the very fulcrum of any human gathering.... Name me one social gathering or function that doesn't at some point involve sitting and eating together....
I am occasionally driven to ask whether we haven't made a rod for our own backs.... life is sanitized to the point that there are more and more people sensitive/allergic to foodstuffs than ever... is it the food, or is it us, and what we've done to it - ?!
Whatever the case, I sincerely wish you all the luck in the world, and I offer the only thing I can that might make it more bearable for you.
My shoulder.
XX F.
I am sorry for what you have just learned, and my heart goes out to you and your husband.
But not all hope is lost. I take care of my mum, Who was diagnosed with Diverticulitous ten years ago. She to had to make some radicle changes to her diet. She also is an insulin dependant diabetic. After looking at the diet you posted a link to. I can understand, she went through the same thing.
But she also had alot of fun after she accepted it. She had fun discovering new dishes. ( some that will work for you. If you like I can share some of those with you.) She found that food doesn't have to be an enemy, that it still can be a comfort.
That was ten years ago. So hang in there Dk.
What is PMT?
-bf
Is this life-threatening?
If not, you might be able to change your diet considerably - and then splurge every great once in awhile. I'm just saying that because it seems like something you've been dealing with your whole life as it is - and still being able to exist.
Great modertation may be the key to being able to enjoy the things you enjoy in life.
But, I'd keep it on the down-low that you have to eat meat...
-bf
emmak - that really made me laugh because I viewed the diet she has to eat, and everything on the "Usually ok" list is just about everything I eat on a daily basis (which the exception of the meat - I don't eat that!)!
DK - I am sorry to hear that you are not feeling well, but it is good that they have finally figured out what it wrong. Hang in there and I sure hope you are feeling better soon. The diets not all that bad!
Kim
HA HA HA! I think I know why you said that!
I think I'm going to change the quote under my avatar to read "Site Stinker"
-bf
Another valid point
Hey!, I know I'm a pessimist and a jerk.
Now you're just preaching to the choir
-bf
Is this a genuine question, BF? Have you no close female friends? I am sure our female members can give you far more information that can I but as a son, husband and father of women, I can assure you that it is crippling.
Yep, this is a genuine question.
-bf
At first, I thought it might have been PMS - but I didn't want to assume something incorrect.
Plus, when it comes to all the plumping women have doing on down there - I'm realy pretty ignorant.
-bf
When some people talk to me about the "intelligent design" fairytale, I cite PMS as fair evidence of "cruel design" as an alternative.
The "older" description, huh? Thanks Simon, I guess that puts me in the 'Senior league' - and I thought I was still teetering on the brink of 'Spring Chicken'!! :doh:
Comment-on dit aux hommes ennervés ici;
"Qu'est-ce qui se passe? C'est le premier jour de ta menopause?" ça me fait vraiment rire!!
that was a typo. should have read "plumbing".
my bad.
-bf
p.s. as for PMT/PMS - i would like to start a foundation that could help people deal with "second hand PMT". if you've ever been on the business-end of PMT/PMS - you'll know what I'm talking about...
A lady I work with has a bumper sticker:
'I have ESP and PMT, that makes me a bitch who knows everything!'
"I have PMS and a HANDGUN---any questions?"
Adiana :usflag: :bigclap:
C'est bien, donc - pourquoi ne pas start une thread - ici on parle Bouddhisme'? Quelle joie!!
C'est une fine way d'eliminer all those crazy nosy mecs qui ne parlent pas notre weird talk - !!
HI ADIANA - !!
I can now honestly say that Elohim and I are 'Blood Brothers' - !!
There are different degrees of Thalassaemia Minor.... I have this condition, and am obliged to take Folic Acid on a daily basis.
It's a bit like sickle-cell anaemia, which is prevalent in the Afro-Asian basin. Thalassaemia minor is also known as target-cell anaemia, because the red blood corpuscles look like archery targets, with concentric bands of haemoglobin.... they are produced in lesser numbers than normal blood cells, and are less efficient at transporting oxygen around the body.... Iron is a big no-no....
For my part, I have never been given any dietary reccommendations, but I have been told in no uncertain terms to never, ever take iron as a medical supplement.
So many foods have added iron, like cereals and some health drinks or snack bars.... And when I was pregnant with my first-born, it was an automatic thing for doctors to prescribe iron, as a matter of course... I took mine, like a good girl, and all went well until after the birth, (which was absolutely perfect and text-book stuff...) all the iron my liver had stored (Clever things livers.... if they perceive a toxin is too dangerous to release into the bloodstream for eventual elimination, they will store it FOR LIFE and never eject it....! That's why of all meat I refuse to eat liver.... can you imagine what additives and hormones some animals have been given to eat - which their liver stores?! Bon appetit - !!)
Anyway, back to the plot, for those of you who are still awake....
In short, I had overdosed on prescribed iron, and my system, devoid of any aid, was in critical anaemic condition... I am still unsure as to what exactly happened, but my anaemia was so extreme, that they immediately ...put me on double iron supplement.... :doh:
Two hours later, I was rushed to intensive care, and given a blood transfusion....I subsequently discovered that at this point, my whole system was about 15 minutes away from total failure.... They administered three pints of blood in a little under six hours... Anyone medical here? That's fast, isn't it? I was told it was quite fast....normally transfusions of this kind take longer, but I think they felt the situation warranted it. As it turned out, it saved my life, but it in turn caused a massive hormonal imbalance.
(This is why I now often go under the name of Reginald.....)
My condition was undiagnosed at the time, but subsequently during a routine operation, the same thing happened. but this time, a young nurse who had taken my medical history, put two & two together, advised the doctors. the condition was revealled, and the rest, as they say, is history.....
Still here!!
Le point size du bloody typing quand j'ajoute des accents est un vrai boggle mais je persevere!
You start à ecrire en francais and you introduce un peu d'anglais, de temps to time....!!!!
Really! I'm with you YogaMama...
All I see is:
blah blah, blah blah blah French Fry, blah blah blah, blah blahbudy blah blah Oui Oui blah blah blah blah blah blah blah sorbe blah blah blah blah blah blah blah au jus blah blah blah...
-bf
I don't!
I'm also a forum member of
www.can'treadbooks.com
www.nothingtodo.com
www.condescending.com and
www.learntoshupmypiehole.com
-bf
mais words will never faire mal me...!!
it should have been "www.shutmypiehole.com"
-bf
Fortunately, it isn't life-threatening. But to really see if this is indeed the problem I need to follow the diet very strictly for the first few months before I will even see a big difference. It is possible that I can later splurge (though in small amounts) but if it is IC, I will pay for it for a few days. And while I am currently experiencing the pain and annoyances that would occur if I splurged, I think if I ever feel "normal" I might not think it is worth it.
Thanks. :smilec: